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July 5, 2014

Local woman wants residents to learn about neurological disorder

TIFTON —  A local woman with a neurological disorder is hoping to form a support group with others in the Tiftarea.

Grace Tucker has a form of dystonia called spasmodic torticollis (ST) or cervical dystonia (CD). Dystonia is a neurological disorder that causes muscles in the body to contract or spasm involuntarily, according to the Dystonia Medical Research Foundation. It's the third most common movement disorder after tremor and Parkinson's disease, affecting an estimated 300,000 in North America. Treatments include oral drugs, botulinum toxin injections and several surgical procedures.

According to a brochure on ST/CD, this disorder affects muscles of the neck and shoulders, often twisting the head into awkward positions; may occur with or without a tremor. ST/CD is a complex neurologic condition and may have origins in the basal ganglia portions of the brain; however, this by no means is clear cut. There simply may not be just one area of the brain that will be responsible for ST/CD. Anatomically, there is very little difference from a patient who suffers from this condition and a so-called "normal" person. What may be different is a disruption of electrical and/or chemical signals that a normal person is able to keep in balance.

The brochure further states the cause of ST/CD is unknown. However, there are several theories. There are some scientists who believe that the condition is genetic. In others, a trauma of some kind may trigger the onset of the condition. This may be a physical trauma such as an accident or even a psychological trauma such as the loss of a loved one. Some scientists who deal with the condition believe ST'rs are born with a predisposition toward ST/CD only to have it triggered or activated at some later date.

ST/CD affects movements and is not life-threatening. Due to the chronic pain and other aspects of the condition, people may withdraw from their social lives. These can have a profound affect on personality. Therefore, the help and support of family and friends is very important.

Tucker was diagnosed about three years ago with ST/CD. She said she's been coping with it day by day. She added that ST/CD causes a lot of pain. She goes to Dr. Garbee and Dr. Lindsey at Affinity Clinic. She said they're great doctors, including their staff.

Tucker gets Botox once every three months to help with her condition.

"They put Botox in your neck muscles and that's supposed to help," she said. "But, some people get too much or either it doesn't work and/or either it gets them to where they can't swallow and they have to have a feeding tube."

ST/CD has caused her head to hang down, which Botox helps with and her vision has also been affected. She said she only drives in an emergency. She said she and her husband, Jimmy, try not to travel much. Their daughter, Debbie Hampton, helps out and drives them places most of the time.

Hampton said although Tucker tries to stay positive, she's in a lot of pain and gets frustrated when she can't drive. Tucker says she still does household duties like cooking, washing and ironing. She said when she goes to the grocery store and people ask if she needs help, she hands them a card about dystonia to help explain her condition.

She was told that there are only about seven known individuals with dystonia in the Tiftarea. She wants to reach out to them and form a support group to meet at her home. She said those who are interested can contact her at 229-382-6771. She noted their caregivers are welcome to attend as well.

Tucker is hoping they can compare notes, talk and just be together. She commented that an organization called ST Dystonia, directed by Howard Thiel, holds conferences where doctors come in and speak. She said she's unable to go, and this inspired her to want to form a local group.

Tucker says anyone interested in supporting ST Dystonia in finding a cure can send their donations to ST Dystonia, P.O. Box 28, Mukwonago, WI 53149, or the Dystonia Medical Research Foundation, One E. Wacker Drive, Suite 2810, Chicago, IL 60601-1905.

To contact reporter Latasha Ford, call 382-4321.

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